Please offer advice if you can - mum recently diagnosed with secondary bone mets

Hello there,

 

I’m completely new to all this, but thought I’d give it a go as my mum is a bit of a technophobe!  I suppose I want us to understand what this recent diagnosis means, how I can help her and kind of roughly what to expect. So, this post might be kind of long, but I want to give you as much info as poss, so hopefully you can give me the best advice.

 

My mum is 63. She is married to my dad (65). She was diagnosed with breast cancer last month, had a her left breast and lymph glands removed (of which 16 out of 18 were cancerous). Then the Doctors said they had seen a couple ‘spots’ on a CT scan, potentially in her bones. So, she had another MRI scan and last week it was confirmed it has spread to her spine, 3 ribs and her pelvis. It has all snowballed very quickly from being curable to suddenly being life-limiting.

 

At the moment you wouldn’t know there is anything wrong with my mum, which kind of makes it all the more heartbreaking. 

 

She has been given Letrozole to take - that’s all. No bisphosphonate at this stage. I guess one of my first questions is does this sound right or should she be also on a Zometa (or equivalent) injection too?

 

To be honest, I feel as if I’m on a very steep learning curve with all this. My mum will just accept whatever she is told, whereas I want to make sure they’re giving her the same treatent they would the Queen!!! Which is why I’m hoping someone more familiar with all this will be able to help :wink:

 

I guess the other niggling worry is - how long do you think we’re looking at?! How long before she’s physically affected by the bone mets (apparently at the moment the hard outer  bit of her bones aen’t showing any signs) I guess no one can answer that hey?! It will depend how she respond to he drugs and stuff. I just thought  I’d throw it out there in case :wink:

 

What else? Oh yes, My mum lives in South Manchester and I’ve just found out about the secondary support group in Manchester, so I’m hoping by attending this she might meet people who can help her get her head around everything. 

 

I think that’s it really. My name’s Marie. I’m an only child. And I’m married with a 4 (nearly 5) year old daughter called Betty.

 

Thank you 

 

xxx

 

 

Hello Marie, I love your daughter’s name. :smileyhappy: I was diagnosed with bone secondaries when I was just into my 40’s. I am still here ten years on but I think I’m very lucky to have had this long not everyone does. My bone secondaries were controlled for several years with hormonal treatments like your Mum is having now. When the first hormonal stopped being effective I was changed to another until I had been through a few. After this I started on chemo, which can be do-able and with some chemotherapies you don’t lose your hair.

So reading through your post it sounds as though your Mum is getting good treatment. It might be your Mum does not actually need bisphosphonates yet but I would, in your Mum’s shoes ask why she’s not having anything at the moment. Very Best Wishes to you all, my daughter is an only too and I know it must be hard not having a brother or sister to share the load. I have never asked ‘how long do you think…’ Ten years ago my Oncologist said ‘OK it’s not curable but we can manage this for a long time’ and so far, so good. Hope your Mum is coping ok, it can take a long while to process and work through all the stuff a secondary diagnosis brings. It’s very much one step forwards, two back at times. But one day I promise your Mum she will find breast cancer is not her first thought on waking. We all find our own way of living with breast cancer…x

HI Marie, reading your post makes me think of my own daughter who is maybe a little older than you. I wish the internet had been around for her when I was first diagnosed. I am 68 now and was first diagnosed with breast cancer at 45. Over the years I had a lot of recurrences and was diagnosed with bone secondaries in 2002 but mine had spread very rapidly into my skull, ribs & collarbone, all areas of my spine, hips and pelvis and yet despite all that it has been kept very much under control for most of the time. Lots of good advice in Belinda’s post and like her I think maybe it would be a good idea for your mum to ask why she is not being given bisphosphonates yet. If your mum is in pain make sure she tells them because there is lots they can do.  A number of us with bone mets have had radiotherapy to help. Some hospitals have pain clinics or refer patients to macmillan nurses/hospices who have a great deal of expertise in helping with pain control as well as help with claiming benefits patients might be entitled to and a whole range of other things. I do hope your mum will get her head around this - it is always such a shock but it does get easier and there are lots of us living for a number of years with bone secondaries. It would be lovely if you could share some of this with your parents and even maybe encourage your mum to take a look at some of the posts here - especially the thread called “Bone Mets - please join in”

 

forum.breastcancercare.org.uk/t5/Living-with-secondary-breast/Bone-mets-please-join-in/m-p/477188#U477188

 

Dawn

xx

Hi Copycat and welcome to the BCC forums
In addition to the support here our helpliners are on hand with emotional and practical support for you and your Mum on 0808 800 6000, lines are open weekdays 9-5 and Sat 10-2 so please feel free to call to talk any queries/ concerns through

You may find ths link to the BCC ‘Secondaries’ information pages and further support helpful:

breastcancercare.org.uk/secondaries

Take care
Lucy BCC